My Fistula, My Friend

Artery - vein fistulaI’ve had my fistula since 1995. It started out as a 5cm (2in) red scar, where the surgeon had opened my right forearm just above my wrist and joined my proximal radial artery (that runs down most of my arm to feed fresh blood to my hand) to my cephalic vein (which runs from my hand up the topside of my arm carrying used blood back to my heart).

At first, there was not that much else to see. The high-pressure blood from the artery made the vein stand out slightly above the flesh of my forearm, but no one would notice it and it was sort of normal.

BruitnpicExcept for the thrill, and the bruit: the feel and the sound of the turbulence created as blood from the artery gushes into the vein at the join (the anastomosis). The gush happens each time my heart beats, say, 55 times a minute. The thrill is the heightened tickly pulse I feel when I put my finger onto that join; the bruit is the slow-march drumbeat that pounds relentlessly when I press my fistula to my ear. Both were very primal, raw reminders that my life had changed forever.

Part of me naturally designed for lifting and carrying, cuddling and elbow-bending became the most unnatural of things: a dialysis needle gateway.

My poemAnd it has served me well so far, enduring the business end of over ten thousand 15 gauge needles, firstly stabbing a new hole each time, and later, using the same (button)holes. Buttonholing has helped reduce the tear and wear, but it has still grown and evolved into the sinewy forearm snake it is today.

And despite the occasional, blatant, What the … is THAT? look I get from strangers, it is my friend. If it had a name, it would probably be Ralph. Ralph was my best mate when we were young. He was a poet: smart, conflicted, loyal, explosive and high maintenance. I think of my fistula as a poem written in blood, with many of the same features. It tells my story – who I am and how I got here. So I cherish it, guard it closely, exercise it and service it regularly with vitamin E and TLC.

But a fistula, no matter how poetic, is not natural and will not be taken for granted.

In the early days, accidental or incompetent needling painted my arm with the Fistula Bruisers team colours – black, blue and yellow. An occasional fall where I thought I’d burst my fistula scared the hell out of me and Julie; but thankfully, a healthy fistula is a robust body part. The odd wandering buttonhole tunnel needed a new entry point; sometimes roadblocks needed various clean-outs and rebores to change the flow path.

And each episode inscribes a new verse on the poem.

carpal-tunnel1In 2010 my right (fistula) hand started to misbehave: it was weak and clumsy, my fingers and thumb were numb, with pins and needles and pain at night. I asked around and the universal answer was carpal tunnel syndrome. The carpal tunnel is an actual small tunnel, at the base of my wrist, that carries the nerve that gives sensation to my thumb and most fingers, and tendons from my forearm. Any swelling around the tunnel puts pressure on this nerve and stops it working. Carpal tunnel syndrome is very common in people with long-term fistulas, where the fistula grows bigger and generally causes swelling and compression on the nerve.

The solution is to cut into the tendons that form the tunnel and release the pressure. I had it done that year, and it worked a treat: I was once again able to do up my left cuff button in a flash. And I had a new 2cm scar at the base of my hand, mini-matching the fistula scar on my forearm to boot.

That was seven years ago. Just recently, the symptoms have returned. I went back to the carpal tunnel surgeon, who was sceptical. Carpal tunnel syndrome rarely comes back, so he arranged an MRI. Result: a new syndrome. The symptoms were caused by ischemia (not enough blood flow) in the hand; most likely from Dialysis-Associated Steal Syndrome.

Numbness and painSteal syndrome is where the blood normally destined for my hand is ‘stolen’ by my enlarged fistula. This happens in about 1% of fistulas (old and new). It can be fairly mild, like mine, all the way to complete loss of fingertip circulation and gangrene.

There are several treatments available, including reducing the flow by wrapping a band around the fistula vein, removing a portion of the vein, or moving the join between the artery and the vein further up the arm. All involve fairly complex vascular surgery.

That’s the state of play today. My 22-year old fistula is strong, healthy and just a bit of a drama queen.

I’m not sure how things will work out. I’ll start with visits to my nephrologist and the vascular surgeon who did the last service. Then decision time: perhaps once more around the surgery dance floor, perhaps I’ll just live with a clumsy hand.

Either way, I expect some new lines in my poem anytime soon.

Situation normal.



Dialysis and Aches and Pains

kneeOne of the less attractive side effects of long term BigD is the gradual expansion of aches and pains in muscles and joints: hands, feet, shoulders and knees (especially knees!).

I first noticed it about two years after I returned to BigD in 2008.  Slowly, my joints began to lose their flexibility.  I started to get what I thought was arthritis in my hands and knees.  I couldn’t get my right hand to make a fist, just a claw (maybe that’s what that guy, “the Craw” had in Get Smart?). (more…)

HDF – A new and better dialysis?

hdf machineThere is a change blowing through the dialysis world.  Until recently, we BigD club members have belonged to either the haemodialysis branch or the peritoneal dialysis branch.  But for some time now, there has been a third branch, HaemoDiaFiltration, or HDF and it may just be the leap in technology we have been waiting for.

HDF is a souped-up version of haemodialysis.  It has been around in Europe for many years, but until recently, it has been fiddly to set up and expensive.  But things are changing and most new machines will do either haemodialysis of HDF. (more…)

Dialysis, Carpal Tunnel and Jogging

Well, it’s been two weeks since the carpal tunnel surgery, and I now have both hands mostly functional.

I have become quite adept at waterproofing my hand and wrist with a plastic bag and a rubber band (I tend to go for the bags you get off the roll when buying fruit and vegetables – they are a good size, tend to stay waterproof and when put on inside out, are quite clean).  Accompanying this skill has been one-handed showering (and other toilet activities). (more…)

Dialysis and Carpal Tunnel Surgery

Last Wednesday was another trolley ride, this time for a “Carpal Tunnel Release”.  Julie and I turned up at the appointed hour – 0630 – at Cabrini Hospital’s Outpatient Clinic ready for the day’s work.  Like all appointments related to doctors, the 0630 start was to ensure that I would be ready and waiting for their 8am start.  About 0715 a nurse came for me.  She told Julie it would be about 4 hours, so she could go home and they would call. Off I went through the No Admittance doors into the bowels of Outpatients, first answering identity and allergy questions, then changing into disposable undies, paper slippers, gown and robe.  I put my clothes and my book (who knows, I might have time to read when I wake up…) into a locker. (more…)

Dialysis and negotiating the Carpal Tunnel funnel

I spent the last two weeks checking out my numb/tingly fingers.  My thumb, first and middle fingers have been tingly and at various times numb since I had the fistula rebuild back in February.

I revisited the vascular surgeon who rebuilt my fistula and after examination, he suggested a blood flow review test. (more…)

Dialysis: stealing blood and pinching nerves

One thing embedded into our DNA as a species is constant self-diagnosis.  We look for patterns, indicators and signs that help us form a mental picture of how the world works and why things happen.  This skill has undoubtedly advanced us as a species: we keep asking why until we find an answer that seems right.

We BigD club members are no exception.  And as far as all things kidney and dialysis go, we are chronic self-diagnosers.  I am currently trying to self-diagnose a problem with my hands, and true to form, I can only say that each wrong diagnosis is getting me closer to the right one. (more…)